Pyloric stenosis diagnosis – continuing grief

Infants who need life-saving surgery understandably cause their parents enormous anxiety.  This will of course affect all those among whom they move at a stressful time like this: doctors and nurses, E D staff, their other children, and their extended family and even close friends.

It is sad but true that the great majority of parents who post online about their infant’s surgery for pyloric stenosis (“PS”) mention at least two things –

  1. baby worriesThe diagnosis of their baby’s condition was for them a distressingly demeaning and unnecessarily extended process, not only because of the general medical practitioner(s) involved but also due to pediatric specialists and emergency department staff.  The other almost universal complaint is that
  2. this time was the most traumatic event they had ever had to endure.

This situation continues to amaze and infuriate me.

  • PS is by no means rare.
  • It occurs in between 2 and 5 babies in every 1,000 live births (in developed countries).
  • The symptoms are almost always quite clearly recognizable by the time parents seek medical help.
  • Quite often nowadays parents have done some homework and what they report about their baby can easily be verified.
  • In most cases PS can be quite quickly and accurately diagnosed starting with the classical, observable signs that have been used for a century, and without the need for lab work and imaging.

I urge our readers who work (or may work) with sick babies and their parents to read the two articles to which I have provided links.

Doctor-arrogant3One is a news item from an English newspaper which tells the story of a child with many problems, most of them rare and complex.  It is amazing that despite clear symptoms, her PS was not discovered for 18 months!  The PS cannot have been life threatening, it would have been masked by the child’s other maladies, but once again, clearly identifiable symptoms seem to have been missed for a long, long time!

The other link is to a lengthy letter from the parents of three children, each with serious medical conditions, including one with PS.  This very articulate letter addresses the substantial underlying reason for the problem I raise again in this post.

The problem is not that many doctors lack an encyclopedic knowledge of the huge list of medical conditions and their variable symptoms.  Nor is the real issue that not every medical practitioner has a special knack of diagnosing the reason for a health complaint.

not-listeningThe problem is attitude.  Unwillingness to listen.  Lack of goodwill towards, patience with and respect for patients.  Not only that, but all too often a doctor’s attitudes deeply offend and distress the parents of a very sick infant: a superior, patronising, often denigrating and dismissive manner.

The letter mentioned above expresses well the recognition that many doctors do their work with skill, sensitivity and kindness.  It also conveys that parents and their little patients are (later) deeply grateful for the restoration of normal life and health.

But why do so many of the most vulnerable and anxious “consumers” of health care keep expressing outrage and pleading for much better care from medical professionals?

The present situation must be urgently addressed by medical schools’ selection, shaping and training of their students, and also by the relevant professional bodies, and by far more effective mutual accountability and quality assurance policies and programs.

Most of us can only describe the problem and plead and challenge the medical community to work towards improvement…

Is anybody listening?

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3 thoughts on “Pyloric stenosis diagnosis – continuing grief

  1. Wendy

    What an incredible post! What I think doctors need huge training in is spiritual outlook or, as you put it, attitude. Put compassion and listening skills courses on the medical school curricula! As for the articles, both were excellent. I actually copied the “lengthy” one, for it’s one of the best written articles about this subject I’ve read. Certainly you’ve nailed the problem, Fred – training. What I’ve seen, having worked over six years in hospitals and having been pre-med myself for three years, is that doctors are emotionally and physically abused in their training. They stay up ungodly hours for days at a time as residents at hospitals and are expected to master zillions of tons of information in medical school, so much so that many have little to no social lives. The conditions for training our doctors has to be less like army boot camp, for they pass the abuse on down the line. Who is at the end of this line? Patients! Thank you, Fred, for continuing to beat the drum of this issue. The parents of severely ill children need our hearts and ears and respect. The story of each child’s illness is individual, as your post so beautifully points out, and listening is key along the path to the child’s treatment and, hopefully, their recovery – listening, which leads to right action.

    Reply
    1. Fred Vanderbom Post author

      Again I owe you my heartfelt thanks, Wendy, for your passionate and informed response.
      Just this week the Australian media carried the sorry story of a trainee surgeon in one of our large city hospitals. She had come to complain through the appropriate channels about the sexual harassment and emotional abuse that had been meted out by one of her seniors, and had found that since then all attempts at advancement had been unsuccessful. She advised her equals to cop the abuse and stay silent. This led to much discussion in the media, including the comment of a senior female surgeon that she had not experienced harassment or blocked applications, and that trouble among surgeons must surely be very rare. Which misses the point.
      It is clear from the occasional courageous voice, from the frequent stories of “boot-camp” training regimes such as you mention, and from what so many patients report, that the medical community has some serious issues to address, but which are too often denied or ignored.
      I will continue to publish some of what I find reported.

      Reply

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